June 10, 2009 at 7:40 am

Hey Kristin! You sound like me back in the late 80’s when I first started getting sick with Lupus. I had all the classical symptoms back then and nerve damage was one of them that would come and go. I went to my regular doctor and he sent me to my first Neuro! That doctor was convinced I had MS. But then when all the testing came back he told me I didn’t have MS and that I did have something going on but didn’t know what! Told me I had an auto immune disorder of something and might get diagnosed a year later or die of the disease and still never know!

It took me 5 long years going from Neuro to Neuro and doctor to doctor to finally get a diagnoses. That is when my husband carried me to the University of PA Hospital and they started trying to figure me out! I ended having to see Matk Brown which at that time was a Professor of Neurology back then and worked with a team of Neuro’s. Lupus was attacking my nervous system but my labs were coming out normal. But by the time they finally saw me my labs were coming positive!

It is possible that you have a lurking auto immune disorder that is causing this and it just has not completely come out of the woodwork yet! I know with my disease and experience that I was getting sick as a dog and yet the doctors had no proof of what it was. But when I got my records and read the doctor’s notes he knew deep inside that I had something auto immune. Hate to say this but many doctors go by textbook rules and those labs and testing. If a patient does not show anything then they can’t diagnose the problem no matter what you tell them.

They have to see it for themselves! Documentation! When I found this out I started going in and letting them see my mouth ulcers, my lupus rash, my low grade fevers. LOL! It is very frustrating to say the least! Knowing you have something but WHAT? Sounds to me like you have an underlying auto immune disorder that is coming and going but just not enough evidence there yet to pinpoint what it is! And there are hundreds of rare diseases out there that sometimes overlap each other and the doctors just can’t go and say you have this or that unless they have evidence.

Doctors are just like Auto Mechanics. My husband has told this to many of my doctors. They at times get a problem with a car and it takes them a while to try and diagnose it. Sometimes that car though is a stubborn case and they never get to diagnose it. Or later down the road they do! Even though we have all this medical technology that we have, there is still alot that doctors don’t even know about. We have come a long ways with medicine but still have a ways to go!

Bad thing with Lupus is that there still is no one test that can prove Lupus. They have to go by more than one blood test! And a Criteria List! If I would have been diagnosed right away many years ago I don’t think I would be as sick today because of earlier treatment. But you get really frustrated not getting any answers.